I have every symptom of multiple sclerosis and have been told by several doctors I might have it. I went to a MS specialist recently and he said, after a physical examination, he didn't think I had MS but would run the VEP and Spinal Tap just to make sure (MRI of the brain and lumbar were clear). What else can be causing the same symptoms of MS? I can barely walk, after six months of going from doctor to doctor, with no diagnosis and no treatment.
I am new to this forum and thought I should at least post some of my symptoms. Muscle weakness/pain in all limbs. The pain feels like somone stabbing me with a knife. Tingling, burning sensations in the feet, legs and hands. Tingling in my face and head. Muscle spasms and cramps in the feet, legs, arms, and hands. Dizziness with vertigo at times. I can not look backwards over my shoulder or I lose all sense of my surroundings because they are moving. Nausea and diarhea. Chest pain and shortness of breath. And the latest is hard to describe but I will try. I tried to walk the other day and my right leg collapsed. My fiance had to help me to the car with my right leg dragging behind me. The next day I was unable to walk at all because with every step I tried to take both legs were collapsing. It felt like my legs were jelly and all of my joints were free moving. From feet to hips, I could not control any of my movements. The next day (day 3) I could walk with some assistance with my right leg occasionally giving out and collapsing. Lately I have also developed lumps in or around my joints and in my leg muscles. The lumps in my leg muscles feel like the muscle is balling up and won't relax. And finally, my left hand, which has been almost completely numb for more than 3 months is starting to ball up and I can not always make the fingers straigten out. Any help would be appreciated since I am now going out of state to try to find answers.
I was diagnosed with progressive relapsing MS. A rare type. Only about 5% of people are diagnosed with this type in the very beginning.
You say you have every symptom of MS. what do you mean?
What are your symptoms. MS can have many and different symptoms.
I have not had a lumbar puncture yet. I've had to go out of state to see a Neurologist because the first one I saw here in my city did not run anything but a nerve test on one leg and then diagnosed me as stressed out. He wouldn't even listen to my sypmtoms but could clearly see that I was incapable of walking normally. Anyway, I went for a second opinion. The 2nd Neurologist was very compassionate and said he would get to the bottom of my problem. That was until he read the report from the first neurologist and then he decided I was stressed out also without anything but a EMG. (this doctor said he was going to do a lumbar puncture but changed his mind) I believe the 2nd doctor was defending the 1st doctor and did not want to step on his toes. I don't care whose toes get stepped on, I just want to walk again. I tried only giving a few symptoms but every doctor (except the 1st neurologist) I saw wanted a complete list. I then went to a very good Neurosurgeon I had seen in the past and he believed me and was very compassionate and tried to get me some help but even a doctor he recommended said, "I don't do third opinions". The Neurosurgeon was beside himself and kept apologizing for the way I was being treated. My story goes on and on and doctor after doctor keeps dismissing me. I don't understand why they don't want to help. I've seen 2 Rheumatologists, 3 Neurologists, Neurosurgeon, my General Practice Doctor, and had a psychological exam showing I was NOT depressed (this was another thing they kept diagnosing me with). I've been given meds that make me pass out, meds that make the pain in my legs twice as bad, and meds that make me so loopy I can't speak or move all day long. Needless to say, I don't take any meds now. Oh, I forgot, my GP recommended me to a rehab hospital and they won't accept me???? I feel like my body is dying and I keep searching for answers anyplace I can find them. Thanks for listening.
Please seek treatment at a reknown University (teaching) hospital. Many private physicians are not willing to take the time to deal with patients whoose condition requires a great deal of their time. I am not familiar with those in Florida so I will suggest some in my area of residency. Call your neurosurgeon's office, he can probably suggest one.
Duke University-Durham, NC
University of VA-Charlottesville, VA
Johhns Hopkins Hospital
Many neurological diseases have many of he same symptoms. Below, are two medical websites on which you can find information regarding neurological conditions. The Wheeless site is run by Duke University and while it is called an orthopaedic site, it adresses neurological conditions quite extensively. There is a search block at the top of their page. The Ninds site is the National Institutes of Health. They consist of several thousand of the most elite physicians and researchers, therapist etc.
You can also access the web site for the National MS society. They have a considerable amount of information and your area MS society may be able to give you a list of neurologist.
A lot of your symptoms sound like you have had a neck injury of some sort. You might ask to get a MRI of your Neck!!
Seriously, if you have pinched nerves or ruptured discs in your neck you will have some of the same symptoms. The swollen joints sound like arthritis of some sort.
I'll tell you, Dr's don't really know much. You have to take your health into your own hands... SERIOUSLY....YOU are responsible NOT the Dr's. They are all just practicing.. making their best guess.. so, if what they say doesn't feel right, keep questing after the answers till you feel it is right. Most Dr's act like they are GODS.. but hey.. they're not.. the more they act like that the more insecure and afraid they are. Don't forget that. And watch out for those types.
Dr's will order all kinds of tests.. mostly because they don't know what they are doing, and it brings in money.. so always ask why they are ordering the tests and what it serves.
Sometimes tests are totally necessary, but most of them are just to pull in more money. It is sickening how our whole medical system has turned into just a money making hand over fist McDonalds like business.
I wish you luck and healing. The Best thing you can do for yourself is to have a positive attitude and to call healing to you. If you'll notice, when you get depressed about your health, you feel worse, and your symptoms get worse. Be well my dear.. heal.
Thank you. I already had a MRI of my neck because in 2003 I had a two level dysectomy/fusion of the C5-6, C6-7. The neurosurgeon said my surgery is still doing fine and the neck is not causing these issues. I've also been tested for Rheumatoid Arthritis and Lupus. I'm told I am clear of these. Thank for the positive note. I appreciate it.
Ohhh just read what I wrote and that sounds bad. I didn't mean I am deceiving people with the nickname, it's just that I miss Florida and I can't wait to get back and see the sunset. That is the reason for the nickname.
Hello. In response to you asking me to keep you informed, I got the results of my lumbar puncture this week. My results were abnormal indicative of MS. To confirm diagnosis, my doctor is having me retake the MRI of my brain and c-spine, an OCT test, and a SSEP test. He wants two negative tests to confirm diagnosis of MS. I am just glad I finally found a doctor that believes me and ran the tests for a diagnosis. I am not happy, of course, to get the diagnosis but at least now I can move on and start treatment before my symptoms get out of control. It is also a relief after having two other neurologists tell me I was "stressed out" or "it is all in my head". So, off to Missouri next week to have the other three tests run to confirm diagnosis.
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